All Seems To Be Well

On Friday, just 48-hrs after I admitted myself into the Emergency Department of the hospital, I was discharged with no need surgery. The obstruction was cleared in the time I was in the hospital. The physical recovery has been consistent and happening steadily. The greatest difficulty has been the emotional recovery. It really set me back, being in the hospital and preparing myself for the possibility of emergency surgery. On Friday evening, a friend in my pod came over to see how I was doing. It was when she walked in the door that all the emotion came pouring in -all the memories of past surgeries and what was required of me to get through it. Wow! It was a lot. I feel like I am just now finding my way out of the emotional weight of it all.

What really turned me around was the recording of Episode 30 of my podcast. I spoke with an incredible and inspiring kindred-spirit and survivor of Non-Hodgkins Lymphoma. The time we spent together unfolding all she has been through was the elixir I was seeking. I feel like I'm just about back on my feet. 

Bowel Obstruction: After All These Years

My intention was to release Episode Seven of Season Two of But Seriously: The Cancer Podcast on Friday February 5th. However, early Wednesday morning I checked myself into the Emergency Department and was diagnosed with a small bowel obstruction due to an adhesion.

I’m feeling much better and the need for surgery is becoming less likely.

The colorectal resection I had in 2008 and/or the liver resection I had in 2011 are likely the reason for the adhesions in my abdomen. Apparently adhesions can show up years after a surgery and are not restricted to just the surgical area. 

I’m hoping to be home in time to watch Super Bowl LV

Nine Years Cancer-Free

 

This week I received results for my annual CT scan as well as my colonoscopy. CT all clear & colonoscopy all clear minus one polyp, so instead of having a colonoscopy every three years, I’ll go back to every year or two. I requested every year. I prefer to be vigilant.

Don’t be surprised with a cancer diagnosis like I was.

If you’re 45 or older, make sure you’ve had a colonoscopy. #NineYearsCancerFree

But Seriously: The Cancer Podcast

Many of you know I’m a two-time cancer survivor. 

Crazy, right?!?

Well, one year ago, I made a commitment to create a podcast that provided the world an insider’s perspective into some of the most intimate details of the journey of a cancer survivor.  And I'm thrilled to let you know I am now the host of But Seriously: The Cancer Podcast.

 
Naturally, it's an ideal podcast for cancer survivors to listen to but it's also perfect for family, friends and loved ones of those who have ever navigated a cancer diagnosis. The But Seriously podcast provides a fly-on-the-wall, insider's view into the intimate details of a cancer survivor's diagnosis and post-treatment experience, both of which are less frequently shared with friends and loved ones yet can affect a cancer survivor for years if not for the rest of their life. Few adults can say they're not "One Degree Away from Cancer" and the But Seriously podcast is where we all can create connection and discover eye-opening insights around our thoughts and beliefs about cancer.

Come be inspired by the struggles that have been overcome and the barriers that have been graciously accepted. We are all in this together and the more connection we create, the more navigable our journeys become.

Currently this podcast is available on Spotify Podcasts, Apple Podcasts, Google Podcasts, and Podbean Podcasts. Please share this podcast with your family and friends, your co-workers and clients. And thank you so much! I had no idea it would take so much work yet be so deeply fulfilling.

All the best to you!

But Seriously: The Cancer Podcast

Another Clear Scan - Still in Remission

On December 12th I was in Manhattan at Memorial Sloan Kettering Cancer Center for my annual CT scan and blood work. The scan came back negative so today I remain CANCER-FREE. Seven years with no detectable sign of cancer which means two years officially in remission. Amen!

--

After my scan and blood work, I had some time to kill so the results could be determined. I went to a great coffee shop called Ground Central and had a delicious cup then went for lunch in Grand Central Station of all places. I had a craving for a little something from the Lower Level Dining Concourse and it was quicker to go to Grand Central than to trek across town to the next closest location. Once I was well fed, I started my walk back to the clinic. As I began to near the block on which the clinic is located, I started to wonder what the scan results would be. I imagined how I would respond if the scan came back positive. I ran through the conversation I’d be having with my doc about where in my body the mets were discovered. Immediately I thought of the boys and the significant possibility of my death and no longer being in their lives. Tears began to well up in my eyes. It hurt. I wasn’t arguing with the idea of death. Ok. Actually, I was. I’m not up for it right now. It means so much to have living parents in our lives and I if I had any say, I’d say I want that for the boys. My father passed when I was thirty-three, fifteen years ago, and I still wish we’d had more time together as adults. Yes, I am blessed to have had the time we had, and I wish we had more. And I want the boys to have the same.

So as I imagined the conversation with my doc about how the cancer treatment would go. I also wondered how difficult the treatment might be and how much I’d be able to work. Those thoughts were there for both diagnoses. How much will I be able to work? Will I be able to be a part of the boys lives or will I be too sick from treatment to have what it takes? And I imagined the many hours of tears blended with the many hours of gratitude for nearly forty-nine years of living.

Then I saw my doc and she told me my scan and blood work were clear.

I texted my family, and some friends who knew I was seeing my doc, to say I’m in the clear. Daniela responded and shared her joy with me and asked how I felt. I didn’t have to look far as I began to cry, so happy to have more time to live.

I’m one of those folks who keeps death close to my heart or perhaps at the forefront of my mind. Or both...? It’s one of the ways I remind myself tomorrow is promised to no one. My body somehow endured the surgeries and treatments that went with two pretty substantial cancer diagnoses. How am I still here? I have no idea. Lucky I guess. I keep these thoughts close. They serve me well.

As a child, the saying “Live like today is your last” used to mean getting crazy. Doing everything I’d never done before and always wanted to do. Today it means making sure people know I love them. As I walked out the clinic and rounded the corner where I was walking and crying just hours before, I saw a group of happy folks soliciting people. They were smiling and working hard to engage passersby, so I looked one in the eye and I said, “What do ya got?” She spoke to me about children dying all around the world from hunger, diarrhea, and other issues that are easily resolved here in the USA. She pushed hard for a $33/mo commitment. Then her co-worker chimed in. I told them I would love to and simply can’t afford it. She pushed again. I acknowledged her for her relentless stand for these children, told her I love her and went on my way. The awareness of death always seems to keep love present in my mind.

On my way home on the bus, my mind was foggy and my mouth tasted odd from the prednisone and Benadryl I take to hold off further bad reactions to the contrast used to enhance the CT imaging. My body hurt from the effects of the contrast. My body hurt from my lack of sleep I got the previous  night from the prednisone as well as the anticipation of the scan.  (I'm going to find out if there are any less intrusive alternatives to prednisone). And I imagine my body hurt from my mind’s wondering if I was going to be signing up for more surgery and whichever therapies would be recommended. It’s how it goes. I took the day that followed slow and easy.  No work, just rest. Plus I visited a wonderful little aquarium store after my appointment and picked up three really great little creatures called Kuhli Loaches to add to our little aquarium community at home. It was quite an exhausting day and it was a good day.

This Could Be the Last Time

Shortly after my December appointment with my oncologist, I received a call from Memorial Sloan Kettering to schedule the removal of the hepatic artery pump I've been carrying around for the last five years. I thanked them for the call and said I hadn't made up my mind yet.  I kept having two thoughts. Logic kept telling me I should keep the pump in for another five years 'just in case.' My heart kept saying 'it's time to have it removed and move on' and I'd cringe as I imagined myself going to the local oncologist every eight-weeks to have the pumped refilled (for routine maintenance). This image is really what had me realize it's time to have it removed.

I'm incredibly fortunate, perhaps just damn lucky that I'm not only alive but actually in remission. And to return to the oncologist every eight-weeks for an indefinite future of pump maintenance would keep my mind in a constant cancer mindset. It's really not a logical explanation for why I'm doing it but it is the truth. I mean, my oncologist did recommend it which obviously is very encouraging, but there's also a part of me that wants very much to return to the world that so many of you live in - a world that doesn't include regular caner-prevention maintenance. A world where I no longer get pats on the back and words of affirmation for still being cancer-free and alive. I actually can't really remember what it's even like but it sounds a little more peaceful - a little more free than how I feel right now. And if my doctor didn't think it was a good idea, she wouldn't recommend it. It was just up to me to take the leap.

Now I can't leave out that my son, who is now ten years old, began to cry when I initially told him my doc recommended I have the pump removed. His first response was, "But what if you get cancer again?" I gave him a hug then he sat on my lap and we talked for a bit about why Dr. Kemeny recommended I have it removed, that there are downsides to keeping it in place (infection, blood vessels growing around the pump, which may have already started, to name a few). He began to understand and the next day I checked in with him and he thought it was a good idea to have it removed. I honestly wouldn't have scheduled the procedure without his understanding. I needed to know that it made sense to him. Not that long long ago he said, "Papa, it's a miracle that you're still alive." He understands the magnitude of a cancer diagnosis. I needed us both to be on the same page.

So a few weeks ago I met with Mike Di'Angelica, the surgeon who resected my liver and installed the pump back in 2011. We discussed the ins and outs of the procedure and when I brought up the fact that the pump can't be reinstalled once it's removed, he told me that in my specific case it's pretty likely he could install a second one if he had to. THAT stopped me in my tracks. After all that thought and reflection, all the preparation it took to get me here, I find out he can install another one if he had to?? He said I was a special case for him because all he had to do was cut off part of my liver and - boom - all done. Most of his patients got  to him because they've been told they have inoperable tumors and he has to determine what can be removed and what can't. So, yeah, heaven forbid I have a recurrence in my liver, he can probably install another pump. To tell you the truth, it felt great to learn about this after I decided to go ahead with it because I went into it fully decided with no attachments and no 'what ifs.'

It's an out-patient procedure so I need a driver at the end of the day so I invited my friend Sparx to join me and he agreed to. Sparx accompanied me to NY back in 2011 when I went in for the liver surgery and pump installation. I thought it would be nice to have him complete the victory lap with me.

It's funny. This afternoon, I almost couldn't work. All at once the emotion hit me and all I wanted to do was be outside on this beautiful day. I was thinking about the fact that it's been ten years since it all started. Ten. Years. I had so much emotion moving through me and I really needed to work, so I did what felt right. I closed off my part of the shop, put Back in Black in the CD player, and cranked it. There's something about that album for my generation. It goes right to core. Then I went for a walk while I ate my lunch. What a beautiful day it was. 

So this Friday could be the last time I have a surgical procedure for this ordeal that began a decade ago almost to the day. It was March of 2007 that I was diagnosed for the first time. And this could be it. All day I've had a Rolling Stones tune in my head

Well this could be the last time

This could be the last time

Maybe the last time

I don't know

The only exception is that I was mostly hearing that Grateful Dead sing it today. This really could be the last time. That would be something.

FINALLY IN REMISSION

After nine and a half years I am finally FINALLY IN REMISSION [fill in the blank with your favorite celebratory profanity. Yes Mom that includes you as well, if you like because this is a big deal. Plus I won't tell anybody]. Right up until I heard the news, I didn't know how I'd feel. It wasn't until I told my mom that I was clear how I would respond. I'm overjoyed and starting to sink into relief, wondering what life without all these appointments will be like.

I'm on the bus right now headed back to Ithaca as I type this. I opened Spotify to put on some tunes while I found my way through how I would express the thoughts I have going on in my head and I couldn't think of what I wanted to listen to. I really wanted to listen to something but nothing came to mind. Like nothing. It was really weird. I just stared at the screen and then I thought of Men at Work Business As Usual and thought "What?! This is what I want to celebrate remission with?!?" So I thought about that.

I was eleven years old when Business as Usual was released. I played that cassette in my Walkman until it was too warped to tolerate, while I delivered my morning papers.

I only like dreaming all the day long

Where no one is screaming 

Be good be good 

Be good be good be good 

Be good be good be good

Be good Johnny

What kind neighbors I had. I took forever to get my papers delivered. Pulling around a two wheel basket loaded with papers because I took on a second paper route, making patterns in the snow with the wheels by turning the cart around in different directions, almost never meeting the required 6:15 AM deadline. What I am talking about "almost." More like never. Hahahaha! Perhaps the album speaks to me because back around that time I still had a little innocence remaining, before a rather abrupt crash course into the realities of the world. For me the early 80's were a time when I still believed anything was possible. It was incredible. And every once in a while, the music of the 80's will bring me back there.

So yeah, after nine and a half years (nine years and nine months actually) I am in remission. Dr. Kemeny immediately said I can have my, Hepatic Artery Pump aka the Kemeny Pump removed. When the pump is removed, it can never be installed again, so there's a risk. I asked what the odds of recurrence are and she said something along the lines of very, very low. Highly unlikely. And she immediately followed it with a story about a patient of hers who had a recurrence in his liver five years after his pumped was removed. She laughed as she told me because it was so absurd that it even happened. I essentialy have as much chance of a a cancer diagnosis as you do. And Americans have a one in four chance of being diagnosed with cancer. What's different for me is that if I have the pump removed and then I have a recurrence and it's in my liver, I won't have the option of the Kemeny Pump, the most direct way to attack liver tumors.

Before I met with her, I was talking to guy who went a year without recurrence and now he's back for treatment for a few inoperable tumors. Talking to him was easy because he's clear that any time he has now, one year or twenty years, it's all bonus. Because it is. I suppose any time on earth for anyone is bonus time, but you just tend to be aware of it more frequently when you've been faced with the high probability of death. What wasn't easy a little later in the day was sitting just feet away from a few folks sitting together trying not to cry, barely able to take their eyes off the floor, let alone look at each other. You can always tell when a family is at Memorial Sloan Kettering for the first time. Most of us looked like that. Awestruck, heart-broken and terrified. When I made eye contact with two of  the three who were even willing to look up from the floor, they quickly looked away. I made myself available to talk with them because I wanted them to know the suffering can go away or be greatly reduced but it was clear they just didn't have it in them. I get it. It's really hard for most folks to talk with people when they're anxoiusly awaiting the doctor's prognosis. God bless em.

So, for a few years now I've been chewing on whether our not to remove the pump once I'm in remission. Naturally I want this thing out of my body. And my highest priority is the two kids in my life I want to be around for and I don't like the idea of reducing those odds. I could also wrap myself in bubble wrap every time I go outside or simply never leave the house. I told her I'd think about it, but at the moment my loudest thought is to remove it and move on. To walk away from the pump maintenance that's required of me every eight weeks. It's a lot to think about and I'm in no rush. I've just been told it's highly likely that I won't be dying of cancer anytime soon.